The other side of the curve

Well, I have just survived another “curve ball”….I’ll furnish you with a bit of a back story to put you in the picture.

So, back in June, when I spent some time in the hospital due to chemo toxicity, they took a scan of my lungs…due to having a couple of blood clots in the past, they are always mindful that any racing heart, chest pain type presentations could be another blood clot. As it turns out, it wasn’t, and I remember them commenting at the time that my lung tumours, which had only recently been discovered and were really small, were quite hard to see on this scan, so they were probably responding to the chemo that I was on at the time. Sadly the rest of my body was not coping with the chemo, kidneys not working properly, heart racing at dangerous levels, de-hydration, so that was when we decided that I would take a chemo break for a few weeks and we would have our QLD holiday.

While I was there, I had quite an increase in pain, and I knew that my cancer was progressing. A scan when I got back showed that it indeed was, but only marginally. There was a liver tumour pushing against a nerve and that was resulting in extra back pain etc. Once I knew progression was minor, I was quite calm, knew I just had to get onto the new chemo regime and hope like hell to push things back again. I’ve done it before, just a minor blip.

Fast forward to last Tuesday. I had my 3rd chemo on the new regime that day, and for the first time, I had been able to have the 100% dose, as my liver was coping well and the function tests were improving. I felt really good about that, and also the fact that I was settling into a pattern of life on this chemo, acknowledging a couple of shitty days at the start, but then the rest of the fortnight was really good quality life, with me just having to learn to manage and roll with a few side effects. I had my stunning new office, I was punching out the writing, and feeling good about things in general.

So, I came home on Tuesday last week, settled into bed to get ready for hell night of neck sweating and general arse, when I was hit with a shocking pain all over my liver. This in itself did not cause panic, my liver has always been sensitive to pain, and is always worse on chemo than when not, even if tumours are responding. I just thought all good, that is that 100% dose giving the tumours a good old bash, and I took the maximum dose of Endone and some sedatives and went off to sleep. As I drifted off, I could feel pain nudging into my right shoulder tip, which is where a lot of liver pain is felt as it is the liver being pushed upward into the shoulder. Once again, had it before many times, didn’t panic.

When I woke up, the liver pain was gone, but my shoulder felt like someone banged into it with a hammer. I soldiered on, but by Friday worry was starting to set in a bit, that the chemo wasn’t working, that this was a bigger tumour, not inflammation, that this pain just wasn’t going away. On Friday night I was starting to get a bit stabby and cranky at everyone, as constant pain does that to a person, so I thought I would visit my GP and see if he could put me on some stronger opiates until Wednesday, when I could discuss this with my oncologist. My GP is very kind, and thorough, and he was a bit alarmed that an intake of deep breath really stabbed me in the shoulder, and he wanted me to go straight to hospital to rule out a collapsed lung. Argghhh, not another trip to that dire emergency department, when I would waste hours of life waiting for an xray. But my GP said something lovely like “we have to take special care of you, as you are special”…what could I say to that, so I told him off lightheartedly for ruining my plans for the evening, and promised him I would go.

He wrote me a well worded letter, which got me triaged immediately, and in came possibly the nicest, kindest emergency department consultant I have ever met, and I’ve met a few of them now. Not for him to keep me waiting hours for scans, and news, he rang the orderlies to get me and wheeled me into the xray room himself. Stood there the whole time, speaking gently to me, reviewed the results immediately. No collapsed lung, but he said he was buggered if he was going to have me dying of a blood clot, so he was doing a CT scan to look for one of those. He didn’t want me in this pain, so he iv’d me up, and stood there and administered morphine himself until I was comfortable, and we chatted about our kids, and my book and life in general, he barely left my side. I sent Gaz and the kids home to bed, knowing I was in the best possible hands with this guy, and grateful that I inspired such kindness in people. He wheeled me around again for the CT, which confirmed no blood clots either. He wanted to make sure that I stayed relieved of the pain for a while, so he wheeled me to a room in emergency that was as far as possible away from the busy STAT area, and left me to snooze for a few hours.

When I woke up, I decided to go home to my family, all sinister things had been ruled out, and I hate to be away from them. Dr Lovely would really have liked me to stay awhile, but understood, so he called for scan reports, discharge summaries etc. And then he said it.

“It looks like you have had quite a bit of progression in your lung tumours since the scan we took in June”. He wasn’t to know, but I only ever discuss these things with my oncologist, and I did NOT want to know. But of course then I had to ask for the full picture. 3 tumours were more than double in size and there was ANOTHER ONE that I didn’t know about.

I immediately started to logic it out. There was another scan taken on my return from QLD at the end of August, and the hospital did not have that scan. I knew there had been progression, but I had not asked my oncologist for any measurements, and he described it as “minor”. Perhaps they had already progressed to those levels, but it seemed a bit more than “minor” and the additional tumour was a real hammer blow.

The world that I inhabit is largely one of optimism and hope. I know quite a few people with my cancer who have responded well to chemo and made it to five years and beyond, almost like their cancer was a chronic illness, rather than a terminal condition. Make no mistake, my positive response to chemo treatment is the only reason that I am still alive, and continuing to respond to it is the only thing that will keep me alive. So, if my cancer WAS progressing while on this new chemo treatment, it was unquestionably reduced to a matter of months to live. My tumours are big, invasive, when they start winning, the process will be swift. So, I don’t care how optimistic or logical you are, that kind of news is going to turn you into a bit of a mess. Add the severe shoulder pain, and things were looking pretty shit.

So, I went home and told Gaz the news, and we commenced our terrified staring at the ceiling…there would be no sleep for us that night. I decided to just wait until my oncologist appointment on Wednesday and talk it through with him then, so I stumbled through my once again abnormal days, auto-pilot on.

So, yesterday was the day of reckoning. Indi came and got into bed with me in the morning, molded her body into mine, and she sighed, her breathing finding the pattern of sleep again. I know that sigh, that perfect peace that says you are with your person, the one that you know loves you more than life itself. I really started to cry then, more than I have cried in many a long time, my hot tears falling on her face, trying not to wake her with my heaving. Could I really be gone from her life in a matter of months? Who would make her sigh then? I don’t want to leave my babies, please, universe, give my heart a break, I can’t take much more.

I dragged my friend Anthony along to the appointment for support, sending Gaz off to work, as he has been missing heaps of time lately, and to be honest, facing these appointments together and carrying the weight of each others grief and fear into them actually makes it harder. While waiting to go in, I was saying to Anthony that I am really struggling with the small periods of time between facing potentially major pieces of news. Last year, while trying to work up to surgery etc, sometimes there were a couple of months between “things”, time to settle into a pattern, to breathe, to actually get some enjoyment out of my life. I wonder how much longer I can take it, but take it I must.

The oncologist called us in, starting looked at the last measurements, reading them under his breath. I looked at Anthony out of the corner of my eye, to try and confirm what I thought I was hearing, and he realised too, yes, the measurements he was reading were in the same ballpark as the ones taken on Friday night…the fourth tumour ALREADY there. Nothing had grown, nothing new. FUCK YES! I AM STILL IN THE GAME.

There is a kind of pay off for this bullshit, a kind of euphoria that is probably impossible to explain to someone who is not terminally ill and has temporarily dodged this kind of bullet. I rang my sobbing and relieved husband, I’m still here baby, I’m still very much in my place at the heart of our family. I bolted around the supermarket like an athlete, collecting all the goodies for home made pizzas, lollies for the viewing of the second last episode of the Bachelorette (Indi, Tana and I are terribly invested!) I was literally high on joy and gratitude, sailing around my kitchen, laughing, joking. I started thinking about buying tickets to James Bay in February, as Indi and I love him. I started thinking of buying tickets to Matilda which is also early next year – my girls would love to see that on the stage. I thought about packing the funbus up in December, and the cooling dips I will take in the Mitta Mitta river during the day, the nights spent watching a band at the pub, or having drinks with my extended family. I was supposed to be in a coffin this Christmas, not the Mitta Mitta river.

I won’t really know if the chemo is working until my scan in a couple of weeks, after the next chemo on Tuesday. I won’t speculate, I’ll just settle in for a couple of weeks of normal. Please universe, please!

Here I am after a small procedure on Tuesday to move my port in my chest back into optimal position. Despite what seems like hundreds of strands falling out every day, I still have hair! Scared to get it peroxided though, so two tone hair it will have to be!

Love you guys…till next time…and congratulations if you got through this epic post!

I love to read your posts…was half way through this one with baited breath but let out a sigh of relief at the end!

We are ‘doing ‘cancer too. my husband rediagnosed 6 months ago …the day after we had celebrated 3 years since initial diagnosis. We were told that if they couldn’t do surgery then he would have 6 months to live, left us to mull that one over as they went and had a MDT meeting…half an hour later a doctor bounded in with the news that surgery was booked in! BUT….the words 6 months to live were stuck in my head and have been for the past 6 months, I’m doing a happy pic a day on facebook to get me through this month! I think it’s working!

We recently had a crappy 10 days when an MRI showed some dodgy stuff and we had to wait for biopsies and PET scan results , got through that and then a junior doctor mentioned the C word again at a recent appointment. Really? So back in for more biopsies on Monday , back to worrying whilst we wait for results and hopefully like you we can let out a sigh of relief !

I admire your tenacity , enjoys those moments with your girls , enjoy every moment with them and give Gary a hug from me …it’s hard watching the one you love go through everything !

Julia, you are an amazing woman, I don’t get much time to read in my busy life but always take time out to read your blogs. I believe where there is life there is hope, you are helping so many people through such tough times, surely you deserve a break more than anyone.

I ran the cancer gauntlet with my beautiful Mum, I know those fears well. It can be bloody hard work trying to stay upright some days, you are a strong determined woman and you are doing a sensational job, keep it up. Sending you love, strength and healing XOXOXOX

Dear Julia, l was holding my breath just now reading your post, l burst into tears while you were hugging your little girl, I’m such a sook… Life is tough sometimes but l dont know why it has to be this tough for someone as lovely as you. Hang in there Julia, make all those plans for the future and l know you will be here to enjoy every minute of it with the ones you love , until next time take care ❤💙💚💛🌼🌹🌻🌷Veronica xxx

Jules
Like so many reading your heart wrenching posts I have also fallen a little in love with you , your wonderful husband Gaz and your beautiful beautiful children. Lump in my throat trying to swallow my lunch in a cold cafe in London. Understand the fear I really do and tryjng to plan.. My best friend used to call us double agents. Keep on keeping on Rachel xxxx

hi Julia!
After seeing your story on 60 Minutes and reading your book, I now follow your blog. I admire your strength that keeps you fighting against bowel cancer. The bastard is always there on your shoulder, waiting to take advantage of any opportunity to fuck up your life, isn’t it?
I was diagnosed with Metastatic Breast Cancer nearly 2 years ago…the day before my 52nd birthday! I’d had a mammogram 2 and a bit years previously…no sign of the fucker then! I remember saying to my Oncologist “how can that happen?”
Well it did happen…It was already in my liver and bones…I had no family history…none…zilch! Thankfully I have had good results with chemo. I have treatment every 3 weeks, scans every 9 weeks, ECG every 2 weeks… and I feel okay…no side effects.
Unlike you I have no children…at times it makes me sad but mostly I am glad I don’t have to deal with that…hard enough knowing I won’t see my 5 year old niece grow up…love her as if she is mine.
When you write about your kids and Gaz, my heart breaks a little for you each time. I pray that you have many more Christmases with them, Julia.
Take care beautiful lady and thank you for your brutal honesty…
Cheryl xx